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HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) DONOSI IZVJEŠĆE S WEBINARA ODRŽANOG U ORGANIZACIJI MDS ALLIANCE NA KOJEM JE DR. MARY K. HUGHES GOVORILA O SUOČAVANJU SA STRAHOM OD POVRATKA BOLESTI

Dana 7. srpnja 2020. u organizaciji MDS Alliance održan je webinar na kojem je dr. Mary K. Hughes govorila o suočavanju sa strahom od povratka bolesti. Bolest utječe na odnose s ljudima (u obitelji i šire), na spoznajno, emocionalno i duhovno područje, na ponašanje, sliku o tijelu, kvalitetu života, samostalnost, seksualno funkcioniranje… Najčešći izvor stresa oboljelih je strah, briga da...

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HULL ĆE I OVE GODINE OBILJEŽITI 22.9. – SVJETSKI DAN KRONIČNE MIJELOIČNE LEUKEMIJE (WORLD CML DAY)

       World CML Day 2020. Today, together, more than ever. For a life without CML.   Every 22nd September, the CML Advocates Network leads the World CML Day global awareness campaign.  On this day, chronic myeloid leukemia (CML) patients across the globe come together to raise awareness about our needs to the general public, politicians, and medical professionals across the world. Today, together, more...

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Now, more than ever, we need international action on rare diseases

The Voice of Rare Disease Patients in Europe Making universal health coverage a reality for people living with a rare disease The current pandemic underscores the importance of ensuring universal health coverage (UHC) for everyone, including people affected by rare diseases. In 2019, UN Member States committed to UHC that is inclusive of rare diseases. Now it is time to...

IAPO

NEWSLETTER: International Alliance of Patients’ Organizations – July

      Dear Dražen, Welcome to the July issue of our newsletter. This month, we look ahead to our re-imagined 9th Global Patients Congress now taking place as a virtual event on 16 and 17 September 2020 and share further information. We continue to update our COVID-19 Resources Hub to keep you informed on key topics related to COVID-19,...

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HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) PRENOSI OBAVIJESTI – NAGLASKE S PREDAVANJA S 25-OG VIRTUALNOG EUROPSKOG HEMATOLOŠKOG KONGRESA (EHA) KOJE SE ODNOSE NA OBOLJELE OD KRONIČNE MIJELOIČNE LEUKEMIJE (KML)

For Chronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, EHA 2020     25th European Hematology Association Congress Highlights from sessions dedicated to Chronic Myeloid Leukemia From June 11-21 2020, the European Hematology Association (EHA) held its 25th Congress as an interactive virtual edition.  Although it is the first time since 2010 that EHA Congress has not included a Patient Advocacy Track or any specific...

uicc

UICC Newsletter – June 2020

            UICC Newsletter June 2020 COVID-19 unmasks what cancer patients have long known: The world needs a better and more equitable health system © BCI Ghana In an op-ed published by CNN, HRH Princess Dina Mired writes about the inequities in accessing cancer care and the disproportionate burden carried by the poor and disadvantaged.   Read...

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Living with CML: Toni Montserrat

  LIVING WITH CML   Patient stories to help better understand  daily life with  Chronic Myeloid Leukemia (CML)     Share Tweet Forward My name is Toni Montserrat, I'm 53 years old, happily married to Ana from 1996.  We have a 14-year-old daughter, Laia. My laptop joined our family until we agree on a friendly separation (: I worked for...

uicc

Older cancer patients and COVID-19 – a Special Focus Dialogue

    Older adults have been particularly impacted by COVID-19. A recent UN report outlined the broader effects the pandemic has had on this population in addition to the higher mortality rates: the denial of health care for conditions unrelated to COVID-19, neglect in care facilities, trauma related to stigma and discrimination, and adverse effects on the individuals’ mental health...

uicc

UICC Newsletter – May 2020

… UICC Newsletter May 2020   Protect a new generation from the tactics of the tobacco industry As the world marks World No Tobacco Day on 31st May, UICC expresses concern at the rise in prevalence of youth vaping and calls for the strict regulation of e-cigarettes. Read more UICC’s Virtual Dialogues: a new suite of innovative online services for members...

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Register for UICC Member Dialogue on Tuesday 26th May at 13:00 CEST

    Dear UICC member,   Last Wednesday, UICC hosted the first Member Dialogue as part of the new Virtual Dialogues series, and two more are planned this week and next. We would like to make sure that you don’t miss the chance of joining the discussion.   In the first Member Dialogue, UICC members shared their experiences in three areas: cancer services...

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UICC’s Virtual Dialogues: a new suite of online services for members

            Dear UICC members,   The cancer community is facing a wide range of challenges in its ability to come together and deliver its work, due to the shifting global dynamics. The coronavirus pandemic is placing huge demands on our resilience – whether personal, organisational or at the health system level – and UICC’s role...

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5.1 million people across Europe are living with a rare cancer

The Voice of Rare Disease Patients in Europe New European recommendations on rare cancers There are an estimated 5.1 million people living with a rare cancer across Europe and 200 types of rare cancers. The rare disease community and the rare cancer community are sometimes regarded as two different worlds. But this is far from the reality, as patients and...

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Join our Special Focus Dialogue on Leadership and self-management this Thursday 11th June at 13:00 CEST

    Dear UICC member,   With the outbreak of COVID-19, many organisations have had to adapt to different ways of organising their work, managing their teams and delivering their services. From adopting remote working to exploring online ways to collaborate, organisational models have become more decentralised and agile, while staff and teams have had to learn how to be more autonomous and...